Can't lie to ya. Rough road ahead. In
fact, getting well may be about the hardest and most
difficult thing you'll ever do. But it's worth it! Stick with
it! Never give up hope!

The first thing you should know is that
it gets worse before it gets better. It can in fact get a lot
worse before it gets better. It depends on how long you've
had it, how much of the bacteria has built up, what strain
you have, and many other factors as well.

The Lyme bacteria gives off a chemcial
toxin when it dies. When the antibiotics start killing them,
the toxin levels in your body will soar and the symptoms can
become intense. Physical symptoms include pain, numbness,
swelling, tremors, and a myriad of others if internal organs
are significantly affected. The toxin affects your mind as
well. Typical symptoms include insomnia, confusion,
disorientation, depression, anxiety and panic attacks. These
will all go away as you get well!

As if the toxin effects weren't good
enough, another fact about the Lyme bacteria is that it grows
and reproduces slowly. At first that may seem a good thing,
except that antibiotics are generally able to kill it only
during certain stages of it's life cycle. The end result
being that it takes a long time to get well. usually months.
There have been cases of "miracle" cures in just a
couple weeks, but these are rather rare. Just don't give up
hope! Keep at it! Keep trying! It takes a long time, but
being happy and healthy again is worth it!

Of course we'd all probably like to
have our mind functioning properly again as the first step in
getting well. Unfortunately, that won't happen. Your mind
returns last, when just about all the bacteria are dead.
Physical symptoms like pain and numbness go first, then the
bacteria that didn't cause pain, and then, finally, your head
begins to clear up. This can be very disconcerting when your
body feels good but your head is still reeling. Hang in
there!

When you frist start on effective
antibiotics, you'll be in for quite an unpleasant surprise.
Within a day or two you'll feel like you've been hit by a
fully loaded military cargo jet flying at full throttle. Your
symptoms, including the ones you didn't even know you had,
will flare up intensely. Try hard to tough it out. But if you
find that you absolutely positively can't, and this is not
too unusual, ask your doctor about lowering the dosage for a
while, or pulsing on and off until you get through the worst
of it. Sticking on the medication as prescribed, always
taking them right on time, is your best bet for getting
through it as quickly as possible. Don't give those nasty
little bacteria an inch! This can be really tough, because it
takes at least a few weeks (6-8), and sometimes much more to
get through the brutally hard part.

If when you start your antibiotics,
your symptoms don't flare severely, including ones you didn't
know you had, then you may have a strain that is resistant to
that particular antibiotic. Or, perhaps, your body is
fighting the antibiotic and not letting it do its job
properly. This is one reason that two antibiotics are often
used at the same time. It is a judgment call between you and
your doctor as to whether the antibiotics are being
effective, and what might need to be done if they aren't.

Which set of symptoms, the physical or
the psychological, will be the most difficult to handle is
entirely up to the individual. Are you more physically
oriented? Or are you a thinker? Some people are so
happy-go-lucky and full of faith that nothing at all bothers
them. In fact, many people are. You can be like them too.
Just don't bother to worry about it! You're on the right
road. The road to being happy, healthy and normal again!

Is it contagious? The answer is: no one
knows. Spouses and siblings tend to all travel in the same
places, so it is hard to tell if the disease was transmistted
person to person or just infectious bites by different ticks.
The long answer is: that since it's a blood-borne disease, as
long as you don't go around biting people and bleeding on
them, then no, it's not. As always though, better safe than
sorry.

A few annoyances you may encounter
along the way, and should be made aware of if you're the
worrying sort:

1. Confusion/Disorientation. Your
short-term memory will probably be taking a nice long
vacation. You may find yourself confused about where you are
and what you're doing every time the scenery changes. Like
when walking from one room to another, or driving (DON'T!).
Sometimes even when just sitting or lying around doing
nothing. It could also be even more intense, with temporary
bouts of amnesia. But it's a fact of life that vacations do
end. This one tends to be about the most disconcerting
psychological symptom for most people. Again though, it's
caused by the toxin release from the dying bacteria. It will
get better and eventually go away!
2. Numbness. Various parts of your body, both those you knew
were infected and those you didn't, may go numb for a period
of time. Quite often it's just for a day or so, but can also
last for many weeks, until enough of the bacteria in that
location have been killed that the toxin level finally drops.
Don't panic! They all come back! (The numb body parts, that
is!) They'll eventually switch from numb to painful, and then
finally to normal.
3. Pain. Same as 2), but may be sporadic pains instead of
numbness.
4. It's in more places than you know. While you are on
effective antibiotics the bacteria are NOT spreading. Never
had a problem with your back, but now it hurts? Forearms
maybe? Wrists? They hurt now because the bacteria were there
all along, and now that they're dying they're releasing
toxins. It's the toxin from the dying bacteria that causes
the numbness and pain. Dead bacteria is a good thing!
5. Insomnia. And not just at night either. You may find it
impossible to nap during the day at all. You may get to enjoy
every last minute of the worst part. As the toxin levels fall
though, you'll be able to sleep better and better.
6. Hallucinations and voices. These can occur during times
when your mind and body are exhuasted but the toxins won't
let you sleep. You may be trying to rest, but your brain gets
stuck halfway between sleep and awake, dreams and reality
mix. Better sleep at night, along with less activity during
the day, should help these symptoms disappear. Ask your
Doctor about sleeping aids you can use if necessary. However,
if you get these symtpoms while you're wide awake and have
gotten reasonable sleep, consult your doctor immediately.
7. Tremors, shakes, and spasms. Can occur in various places
to varying degrees. The length of time they last varies as
well. These may be caused by bacteria dying near, and hence
irritating, a nerve which controls motion.
8. Sweats, hot, cold, day and night. Get used to them. You
might consider adding just a bit of extra salt to your diet
so that you don't becaome salt/sodium defficient.
9. Fireworks, popcorn, or pin-cushion pains. These tend to
feel like someone has picked a part of your body and decided
to jab it with a pin a few times. Then they go and pick
another spot. These are probably just irritations of pain
nerves, or perhaps bacteria dying inside a nerve itself. You
might notice that they tend to occure in your most affected
areas, and that more effective antibiotics cause more of
them.
10. Heart palpitations or irregularities. Notify your doctor
immediately so that they can determine if the irregularities
are severe enough to be dangerous. In some extreme cases,
people have been put on a temporary pace maker until the
worst of the symptoms have disappeared.
11. Dizziness and Vertigo. It's everywhere else, why be
surprised that it's in your ears? Symptoms here can range
from a feeling of "walking through jello" to
complete loss of orientation.
12. Temporary Amnesia. Really this is just an extension of
memory loss symptoms, except that instead of just losing your
short-term memory, mid and sometimes long-term memory can go
for a hike as well. These symtpoms can last anywhere from
just a few minutes, to a few weeks, and will probably only
occur during the first month or so of treatment.
13. Aliens Under My Skin. usually felt in the forearms or
shins, but can occure anywhere, this feels for all the world
like little turtle-shaped aliens crawling around in the
affected area. These are actually associated with an attack
by your own immune system against the bacteria, and are
probably the result of localized swelling and toxin releases
from the bacteria dying under the attack.
14. Sudden bouts of weakness and symptoms flares. Your body
is fighting the bacteria alongside the antibiotics. But your
body isn't always a nice steady predictable stream.
Occasionally, and even frequently during the first cycle or
two, your body will attack. Sometimes with an
all-out-vengeance that will literally leave your knees weak
and you panting for breath. In extreme cases, this can
actually cause fainting. This can be very disconcerting if
your're not expecting it. As long as your heart rate and
blood pressure are OK, then youre' probably fine. Go over
your drug allergy checklist and consult your doctor if you
think it might be a delayed reaction to antibiotics.
Normally, this feeling will drop in intensity within a few
minutes.
15. Headaches. Can range from not at all if you're really
lucky, to some really intense head-splitters. Do whatever you
can to survive them.
16. Disconnection. Close your eyes, now where is your arm?
OK, look at it now. Doesn't really feel like it looks where
it is, does it? The extreme of this symptom is a complete
out-of-body experience. As toxin levels fall, you should
become more and more re-connected to your body again. And
there you were thinking that you were just getting really
good at your Yoga exercises.......
17. Panic Attacks. You don't want to get these, really, you
don't. It's a feeling of "Oh my God, I'm going to be
like this forever, I can't take it please, somebody just kill
me and get it over with..." The only possible good thing
about this symptom is that it goes away.
18. Bright Colors. Your pupils may dilate a bit. Indeed, you
may find yourself wearing sunglasses, inside!
19. Hypersensitive Hearing. Your ears may become
hypersensitive to sound. In extreme cases, sound, even very
quiet ones, can become painful.
20. Mood Swings, Irritability/Short Temper, Erratic Behavior.
Again, all due to the toxin's effect on your mind. These will
all clear up as you get well. These symptoms can be
especially difficult for those around you to deal with.
21. Yo-Yo. You'll be feeling like one. Up one minute, down
the next. You might wake up feeling great one day, only to
find that a couple hours later you're back feeling horrible
again. UP, down, up, down, all around. Slowly, month after
month, the downs will stop being quite so low, and eventually
go away.
22. Whatever Else. Everyone is different, and the disease is
quite well known these days for just how differently it
affects different people. Any other significant symptoms that
you are concerned about should be discussed with your doctor.

HELPFUL HINTS:

1. You may need help to get through
this. You should not be left alone for long periods of time.
Someone needs to be around to help encourage and reassure you
along your rough road back to wellness. Your mind will not be
working properly, and it's easy to become confused,
terrified, and discouraged. Make sure you have someone to
talk to when you need them. Just a phone call can help
tremendously! Emotional release, if needed, can be good for
you! Rare are the ones who can make the journey back to
wellness without a few breakdowns along the way. Call around,
ask around, find your local lyme disease support groups. Talk
to them. That's why they're there. They want to help!
2. Eat! When you finally get through this, you'd certainly
like to enjoy life again as soon as possible, wouldn't you?
Well you can't do that if you're a shriveled-up little mess.
Solid food is best, but may prove difficult for a while.
Liquid foods like "Ensure Plus" and "Instant
Breakfast" can help keep your calorie intake up. Don't
forget your basic "Multi-vitamin & Minerals"
either. And eating does much more than just keep your weight
up. It provides energy for: your own immune system so it can
fight too, for all the healing that has to take place, and
energy to help your body process the toxins out. Eat, and
you'll be healthy and happy again that much sooner.
3. Move and Stretch. The worst ting you can do is just sit or
lie around all day. Lyme Disease is a deep tissue bug as well
as not-so-deep tissue. It likes to hide and live in places
that are hard to reach, both for your body and the
antibiotics. Stretching and moving around does a number of
things: such as providing circulation going and flushing
toxins out, you help prevent toxic bulid-up and subsequent
possible permanent damage. So if it hurts, stretch it
(gently), move it around, get some circulation in there! You
should be gently stretching everything from your nose to your
toes at least once an hour while you're awake. Go for a short
walk... Even just up and down the driveway, or around the
living room a few times will do a world of good. This is
extremely important during the first few weeks or so when the
toxin levels will skyrocket!
4. Sleeping aids. Do not use sleeping aids during the first
couple weeks or so. As long as you have extreme pain or
numbness somewhere that needs to be moved around occasionally
you're probably better off rolling around and tosing and
turning all night. Once you feel like you can go the night
without accumulating severe pain somewhere, then sleeping
aids are OK. Naturally, use as little as possible. You do
need sleep but you also don't want permanent toxin damage.
5. Take your medication on time, every time, religiously.
Some bacteria takes days to kill. A missed dose may let them
recover and restart the clock all over again. Unless, of
course, you like suffering......
6. Don't stop once you feel good. Lyme Disease is very slow
growing, but the longer you've had it, the deeper into your
system it gets. Deep enough such that even the "instant
kill" family of cephalosporins antibiotics take time to
kill it. Thus it is generally good practice for Lyme patients
to continue effect antibiotics for a number of months after
symptoms have (seemingly) disappeared. Taking medication when
you feel good can be an annoyance, but when you consider what
you're going through now, do you really want to do it again?
7. Lyme Disease doesn't just grow in the bloodstream. It
tends to enter inside your cells and grow there too. Not all
antiboitics can penetrate cell walls to effectively kill the
bacteria there. Fortunately, there are a number that can:
Suprax, Flagyl, and Biaxin for example. One might consider
some time spent on these to help kill any bacteria which
might have crossed inside the cell wall barrier.
8. Know the signs of a drug reaction for those drugs you
haven't had before. Sometimes it can be difficult to
distinguish between a drug reaction and standard Lyme
symptoms. Discuss any concerns or unusual symptoms with your
doctor.
9. Avoid any anti-inflammatory and anti-pain medication.
Mostly at the start of treatment. Inflammation is your body's
way of increasing circulation to affected areas. Circulation
is what brings the antibiotics in to where they need to go
and takes the toxins away. Pain is your body's way of saying
"Hey stupid! Move this part around a bit!" You
might actually find that anti-inflammatories, though, during
the first month or so of treatment, will tend to make joint
pains worse. Once past the hard part though, a bit of
anti-inflammatory and anti-pain medication is OK.
10. Antibiotic Soap. For shower or bath. Not proven to
actually do anything, but may help to kill the bacteria
hiding in the pores of your skin.
11. Contact Lenses. Take them out! Never nap or sleep with
your contacts in! It is just as likely that the bacteria is
in your eyes, as well as everywhere else. A die-off in your
eyes can raise the local toxin levels, but with your contacts
in your body, is hindered from flushing it away. The result
build-up may cause damage to your eyes. Better safe than
sorry! Dig up that dusty old pair of glasses!
12. Depression. Nobody likes feeling depressed. Problem is,
that a fair number of people just get that way after fighting
the disease for a seeming eternity and still not feeling a
whole lot better. Try to find things you can do to occupy
yourself and keep your mind off it. Do whatever you can,
naturally, to lift your spirits and keep them up. Failing
that, it is not out of the question to ask you doctor for a
little help. Make sure to avoid anti-depressants that can add
to your insomnia!
13. B-Complex Vitamins. Thse have been shown to significantly
help psychological symptoms. They also help the brain repair
and protect itself from toxin damage.
14. Injuries. Try to avoid them. The Lyme bacteria thrive on
injured body parts. Bruises, sprains, etc., are a feast with
an open all-you-can-eat invitation. You might, to amuse
yourself once you know the exact length of your cycle, try
mapping back specific short-lived pains to the event which
caused them!
15. Exercise. Gentle stretching and low-level workouts are
OK. But remember that strenous exercise and hard workouts are
actually controlled injury...and injury feeds the bacteria.
16. Yeast Infections - in throat and/or digestive tract. Some
antibiotics are more prone than others to causing yeast
infections by killing off all your good bacteria. Your doctor
should question you about sore throats and intestinal
problems each time you visit. These infections can be cured
with yet more drugs, or avoided all together by simply asking
your pharmacist for "good tummy bacteria", the live
ones". Lactobacillus Acidophilus (they're
non-prescription) Live Culture yogurt does essentially the
same thing, as it contains the very same live bacteria. In
either case, make sure to rinse your mouth and throat with
water immediately after you eat or drink anything, then swish
a bit of your live good bacteria around in your mouth and
swallow.
17. Antihistamines. No. No. No. No. No. And most especially
not when on one of the cyclene family of antibiotics. Your
immune system is one of the biggest factors in your recovery,
one of the big superpowers in the war against disease. The
antibiotics will kill some percentage of the bacteria each
cycle while your immune system kills off the ones that were
weakened. Together, the antibiotics and your body create a
team to defeat the bacteria. Antihistimines, like Benadryl,
turn off your immune system! All they do is make sure that
you suffer longer! Further, the cyclene family of antibiotics
doesn't actually kill the bacteria, but rather just stops
them from growing and relies on your immune system to kill
them.
18. Natural herbs and such. A stroll through your local
herbal and natural foods shop will provide you with an
amazing array of itmes which claim to do all sorts of good
things. Anything that says "boosts your immune
system" might be a good idea. Purely optional, although
a number of herbal concoctions have actually been shown to do
as they claim.
19.Caffeine. Surpresses the immune system, which is very bad.
Give up that morning coffee and that afternoon coke.
20. Alcohol. Worse for you than caffeine. Unless you just
want to be sick longer, no alcohol!
21. Smoking. Haven't you been lectured about this enough yet?
Now would be a really good time to quit.
22. Rest. You're going to need a lot of it. Even after you
begin to feel better, remember your body is still fighting
off a rather nasty infection. Don't overdo it. Without
sufficient rest, recovery just takes longer.
23.Hot drinks. Let them cool off to luke-warm first. Hot
fluids tend to make the dead layers of cells on your tongue
rather thick to protect them from the scalding heat. This
means more stuff for yeast infections to grow in.

Chart it!

Make a chart of your symptoms! Get some
graph paper, on the left-hand column list your symptoms and
various affected body parts, and then across the top number
the days. Each day, fill in the appropriate squares with the
severity of your symptoms. Hurts like crazy? Fill that square
in. Hurts just a little? Maybe just put a line across the
bottom of the square. Record the worst of each symptom each
day. You'll notice that some move gradually up and down, some
might appear constant, and others can blink in and out in
just a day. Now you have a record. With this record, you can
help you and your doctor figure out exactly what to expect
when, and even make a prediction on when you'll feel 100%
normal again! Instead of being at the mercy of the disease,
waking up each morning and wondering "whats the torture
of the day going to be?", or wondering "When is it
ever going to end?", you could be looking at your chart
and knowing exactly what to expect and when! Of course, you
still have to map that first cycle, but from there on out
you're not just blindly muddling along!

Sometimes interpreting your chart can
be difficult. For instance, some body parts may feel fine
during the first month or two, only to become painful later
on. Reason being, is that they started out numb, and as the
bacteria died away the feeling came back to that area.
Physical symptoms that started out painful should show
themselves fading away with each cycle. Basic energy level
should rise each month, although there may only be a slight
increase between the first two cycles. Neuro symptoms should
also improve slightly each month, but they will be the last
ones to finally clear up.

The Lyme bacteria appears to stick very
tightly to its cyclical schedule. These cycles tend to be
about 21 days in men, 30 days in women. If your symptoms
don't appear to be going down with each cycle, then consult
your doctor about increasing the antibiotic levels, adding
another, switching, or whatever the attack plan they might
suggest.

Because the physical symptoms disappear
first and the psychological ones are sometimes difficult to
measure, your doctor may ask you to begin recording your
temperature a few times a day once your symptoms are nearly
cleared. When you've gone through a few full cycles without
sign of a fever, you're done!

The Lyme bacteria will typically have a
peak intensity sometime during its cycle each month.
Beginning, middle, or end is a matter of chance and at what
point you start your charting. But it can be very frustrating
to start your antibiotics on the low end of a cycle, only to
find yourself feeling worse and worse as the days go by.
Which is why you are keeping a chart! It is completely
irrevelant to use day-to day or even week-to-week comparisons
for whether you are improving. The only reliable way to tell
is to compare each months chart and see if the symptoms are
improving overall. Again frustraintg, because you really
can't tell if you're improveing for at least one full cycle.
Unless of course, you're one of those miracle Rocephin cures,
which is rare. The rest of us suffer for a month, and then
begin comparing each month's date to the previous to see if
there is improvement.

Typical uncomplicated recovery. Before
starting your antibiotics you might find yourself feeling
pretty bad, or at the least, not very good. Once you start
though:

Oh my God, I'm gonna Die.

Ugh, I feel horrible.

Feeling bad.

Feeling much better.

Wow! I feel pretty good!

Symptoms gone!

Now

Cycle 1

Cycle 2

Cycle 3

Cycle 4

This chart assumes many things,
mostly that nothing goes wrong, that the choice of antibiotic
and its level are correct from the start, etc..It is intended
to be an example of how a typical recovery might feel.

The Lyme Disease Cycle. Is not really
30 days precisely. Rather, in women it tends to match their
menstrual cycle in number of days. In men the cycle is
usually around 21 day. But again, these vary from person to
person. The only way to know for sure is to make a chart of
your symptoms and then begin looking for patterns.

There are many different strains of
Lyme Disease. Fortunately there is also a vareity of
antibiotics. The trick is to find the antibiotics which your
stain is susceptible to and that your body will tolerate in
high doses. This can be extremely discouraging, to spend
weeks or months on a particular antibiotic, only to figure
out that it isn't working. This is one reason that Lyme
Disease is frequently treated with two different antibiotics
at the same time. Another is that doubling up provides a much
higher kill rate. If the first set of antibiotics you try
doesn't seem to be doing much, don't be afraid to ask you
doctor for a few short trials of some others. Try each one
for three days. Remember how you felt each third day.
Continue with the one/ones which hit you the hardest.

Cephalosporins - When they work, they
work extremely well. This family is effectively an
"instant" kill, meaning that it can kill the
bacteria regardless of the stage of the its life-cycle.
Naturally, like everything else, they're more effective
during the reproductive cycle. But, essentially, this class
of antibiotics pokes holes in the bacterial cell wall and
causes the little buggers to bleed to death.

Penicillans - This class blocks cell
wall formation during the reproductive cycle of the bacteria.
They are a slow-kill antibiotic, but usually highly
effective.

Cyclenes - Generally gum up the DNA of
the bacteria. Without functioning DNA, the bacteria can't
reproduce or grow.

Advanced Macrolides - Block protein
synthesis in the bacteria. Without proteins, the bacteria
have a difficult time doing much of anything.

Metrodizanol - Does three things: gums
up the bacterial DNA, suffocates the bacteria that may be in
anaroebic mode, and breaks their little legs so they can't
run and hide (almost literally! The bacateria use their
flagellum to escape attacking white blood cells, but without
functioning flippers, they become easy targets). One possible
problem with this antibiotic, is that it may be a tad too
useful. By enabling the immune system to see and catch the
bacteria the body is suddenly hit with the realizationthat
there is tremendous infection going on. The immune system
response can be intense. Possibly a great choice for
"mop-up" later in treatment.

Antibiotics dosage and duration.
Typical bacteria have very short cycle times, usually
measured in hours or minutes. This means, that an antibiotic
that is given at a standard rate to produce an effective
10-20% kill rate can kill a typical infection in just a
matter of a few days. With each cycle the antibiotic kills
some percentage of whatever bacteria are still left. When the
numbers get low enough your body cleans up the stragglers,
thus keeping the "percentage of what's left" from
becomming one of those "limits that never reach
zero" problems that you dreaded back in high school
algebra. The Lyme bacteria behaves the same way. With each
cycle the standard rate of antibiotics will kill some
percentage of whatever is there. Except that the lyme
bacteria has a cycle time measured in weeks! (3-4) It could
take years to kill the infection at standard rates!
Antibiotics are dosed quite high, and often combined, in
order to achieve the highest kill rate possible without
killing the patient (you) in the process. But even forcing a
very high kill rate can still take 4-6 months before the
levels are brought down far enough for your body to overwhelm
the stragglers. The other reason that antibiotic levels are
kept very high for Lyme Disease treatment is that the
bacteria isn't just in one or two easy-to reach places. It's
everywhere. That includes the central nervous system (CNS)
and inside cells, joints, etc, etc....Many antibiotics have a
difficult time reaching these places in concentrations high
enough to effectively kill the disease in these areas. Don't
let your doctor underdose treatment options and effective
dosage rates. Duration, or how long you stay on the high rate
of antibiotics is just as important. A typical infection by a
typical bacteria is beaten to death for many cycles past when
it should have all been dead, just to make sure. Why not the
same with Lyme? Currently, you'll be lucky if your doctor
agress to one full cycle symptom-free. Press for one full
cycle fever-free. If you manage to stay on antibiotics for
anything after that, consider yourself blessed. But 3-4
fever- free cycles, assuming that you're back living a
healthy lifesytle and doing what you can to keep your immune
system pumped up in top condition, well, that should to it.
Time to stop and see if it's really as dead as we all hope it
is.